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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, March 19, 2006

 

The Economy of Pity

My background is unique in discussing the economy of pity. I began my circuitous career as a curator of art, later a director of a large event, then a corporate fundraiser and marketer for two major health charities. I also summized that art made me an effective beggar of money (not many love to fund art, to my chagrin). After Adam was diagnosed with autism and NAAR came to Toronto, and coming from Jewish family entrenched in the Hebrew ideal of tzedakah (helping those in need), it seemed natural for me to raise money for the cause that was dear to my heart: autism. At the NAAR Kick-Off Luncheon, I was asked to speak about autism. I sat and waited for my turn as Corporate Chair, becoming agitated already with what I was hearing. I was listening to leaders talk about how they “lost” their child, how devastating it was for them, poems elicting a tremendous amount of pathos from the audience. In my speech I instead spoke about research to help us understand our children with autism better. I did not talk about cures – I spoke about awareness. It was my hope that others would share the same optimism. I quoted Paul Collins:

“Autists are described by others – and by themselves – as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, “Where’s that man’s arm?” But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.” -- Paul Collins, Not Even Wrong.

I was approached afterward by educators and parents, who said they thought my speech was the best. While I am a very good speaker, I considered that my words about acceptance was the source inspiration as opposed to those mothers weeping at the “loss” of their children. It didn’t take long – a meeting with Glenn Tringali, a phone call with Alycia Halladay, appealed for my continued support to sit as Chair of NAAR. I remember sitting at The Four Season’s Hotel with Mr. Tringali, saying that if I joined, my mandate would be to raise awarness – the brand that I was selling. I addressed a consideration when Dr. Buxbaum made a quote about being able to prenatally test for autism, and to what end. A snarky email later, addressed to me by Joseph Buxbaum, and no return call from NAAR agreeing to my wish, I quickly realized that NAAR’s marketing appeals are not acceptable, if in fact inflexible. This is not to say I haven’t met scientific researchers funded by NAAR who are themselves questioning the marketing and the research, and in order to protect them I will not reveal their names. Believe it or not, there are scientists out there who have come to the same conclusion that I am revealing here. Similar to the difficulty of pulling away from ABA to try other methods of teaching Adam, leaving the gods of research initially made me uneasy. Afterall, what might the research tell us? Who was I, not scientific in the least, to question the gods? Once looking carefully at the bulk of research, I realized that it will go on with or without my support. It doesn’t need me. There are people who will find the genes, who will sell the pills, who will abort the fetus. The only thing I can keep doing, we can keep doing, is to keep talking. Give speeches, make exhibitions, run media campaigns. Did you know that eighty per cent of fetus’ with Down Syndrome are aborted? Isn’t that number shocking? I think of little B running down the hall of Adam’s integrated nursery school, a huge smile on her face, living life to its fullest and wondering what is wrong with my wiring that I’ve missed out her type of joy. Having children who are “different” is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one.

NAAR recently posted a book about accepting autism on their website. While it’s an attempt, I still appeal to them to change their fundamental error – to suggest that autism requires a cure at the utter dismay and disagreement of those with autism. I’ve asked NAAR to consider giving me an opportunity to voice these concerns, to change their semantics, and to conduct research only directed by autistic persons and to keep one ultimate goal in mind – the acceptance of and quality of life for families with autism as they are. Change, if it happens at all, will be slow. Now partnered with Autism Speaks, NAAR has an annual budget in excess of $30 million, with CIBC World Markets in the US trying to raise more “miracles,” and Home Depot is doing their part donating $25 million to the cause.

I certainly can’t offer a matching grant of that amount to get NAAR to listen to me, but I am a parent who “can speak up for my child,” and do so by listening to others with autism as well. I can’t compete on the same playing field with cause-marketing thrusts to make companies appeal, with their good intentions, to customers. What I suggest companies are missing is a due-diligence. Do they know what brand of pity they’re paying for? In War Against the Weak, Edwin Black writes about the first three decades of the 20th century when American corporate philanthropy “combined with prestigious academic fraud” created the pseudeoscience of eugenics that “institutionalized race politics as national policy. The goal: create a superior, white, Nordic race and obliterate the viability of everyone else….How? By identifying so-called `defective’ family trees and subjecting them to legislated segregation and sterilization programs. The victims: poor people, brown-haired white people, African Americans, immigrants, Indians, Eastern European Jews, the infirm and really anyone classified outside the superior genetic lines drawn up by American raceologists.” We always have to ask ourselves what is the end to this means of genetic research. Must we simply accept the good with the bad in the name of progress?


War Against the Weak By Edwin Black discusses how American corporate philanthropies launched a national campaign of ethnic cleansing in the US. Posted by Picasa

It seems to me, after having made hundreds of solicitations to corporations myself over the years, that no one thinks twice about the brand of pity they disperse. Pity is one and the same and it just makes us plain good. There is little discrimination going on the world about who is soliciting for what. So long as the message is filled with a little bit of logos and a whole barrel of pathos, the cause is whitewashed under the guise of “doing good.” It is a problem with altruism, actually. This is how Nietzsche felt about so-called `benevolence’:

Is it virtuous when a cell transforms into the function of a stronger cell? It must do so. And is it wicked when the stronger one assimilates the other? It must do so likewise: it is necessary, for it has to have abundant indemnity and seeks to regenerate itself. One has therefore to distinguish the instinct of submission in benevolence, according as the stronger or the weaker feels benevolent. Gladness and covetousness are united in the stronger person, who wants to transform something to his function: gladness and desire-to-be-coveted in the weaker person, who would like to become a function. The former case is essentially pity, a pleasant excitation of the instinct of appropriation at the sight of the weak: it is to be remembered, however, that “strong” and “weak” are relative conceptions.”

Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage, serving only to marginalize them. On the other hand, where would the Stephen Hawkings of the world be without the help, the selfless behaviour, of others? Love from his caregivers was what kept him alive, and archeological digs have revealed the remains of people who evidently lived for long periods of time being crippled.

I will posit here, in this initial draft, that Autism is the one “disability” that may change the course of philanthropic history, that may be able to jolt citizens into giving with knowledge as well as with heart. Autism is neither a race nor a disability, it is a way of being. It may even be viewed as a course of human evolution, and most illustrative of all human difference. On the surface, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means, if presumed competent, if given the chance, much like Stephen Hawking. Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren’t they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?

I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.

Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – perhaps one day to find themselves confronted with violations against human rights. I don’t think they are prepared. People with influence (those in control of the media), appear shiny and credible in the eyes of fellow CEO’s. Logos – the rational appeal of statistics and numbers manipulated for Pathos is the thrust of this economy. The most “underfunded disorder,” “1:166 children affected,” mixed with a little “epidemic” lingo is enough these days to convince a CEO to give. On top of that some media profile, signage and press releases for being a “responsible corporation” -- another rational and economically sound reason to give.

Autism requires donors to do their research. It requires others to talk to people with autism as the experts of it. It requires philanthropists to fully understand the motives of charities asking for money for the sake of a cure.

"Autism is finally speaking," says Suzanne Wright. "Now the world will listen...Be loud, be brash, be emotional, be angry," added Bob Wright.

"Don't accept it," Ms. Wright continues.

Yes, Mr. And Mrs. Wright. Autism is speaking. But not through you.

26 Comments:

Anonymous mike stanton said...

Excellent. I am going to read it again now.

2:50 PM  
Anonymous Lisa said...

You might enjoy the book "Somebodies and Nobodies" which makes the case that a fundamental difficulty in society is the abuse of rank - that is, a stronger person or group deliberately employing practices to keep weaker people and groups from rising. This point of view sees discrimination against races, genders, disabilities, sexualities, and nationalities as one in the same. I found it to be a very interesting perspective.

4:50 PM  
Anonymous Michael said...

Estée

You have struck at the heart of the problem as regards donors and the dispersion of said funds. In particular I like your reference to “pity” and brings to mind a quote - "Those who through arrogance declare pity are to be pitied." (unknown).

There are those who donate to a cause from the heart, perhaps because they recognize their more fortunate state as that of being in the right place at the right time, but not through perceived superiority, and want to share their good fortune. Those are to be thanked.
Then there are those from whom one may take without humility (mostly corporations), as it is often done to suite their financial cause, or as part of a budget. The latter donors frequently don’t care or simply feign interest in a cause and (you’re right) frequently do not do their “due-diligence”. Don’t bother to try and change them as it is a financial decision, unless you can make it “politically correct” (oh, how I hate these two words) to do so.

The “war of the strong” (to twist Edwin Black’s book title, not having read it) makes me think of many a quote that go something like this “Kings are disposed by other kings in mere years, who then are manipulated by the meek.” Strong vs. weak, is a question of what defines strong or weak. If the perception is today’s industrialist as being strong, then why is it that their names are seldom remembered past a few years. Then there are individuals like Nietzsche, Emanuel Kant or Spinoza, all very different, small in stature, sickly and even weak in one case, but more than onehundred years have passed and they are still rememberd. Yes, it is the strong who are constantly fighting to maintain their position, but are mostly forgotten.

When it comes to grants for research, well, we have to feed our intellectual machine as it makes for good “Government”. Unfortunately, often the only criteria is the credential(s) of the group or individual seeking a grant. Hey, sometimes some good comes from this.

Hopefully, in the future more funding is appropriated to increased understanding and awareness to a new way of looking at the world.

Bravo Estée, love reading you blog, but then why wouldn’t I.

7:46 PM  
Anonymous Camille said...

Estee.

You are wonderful. Here's a huge hug and a kiss on the cheek if you want them.

I love Paul Collins. Bless you forever for quoting him to that assembled group. Bless you for trying to reframe the discourse. You need to join forces with Dr. Gernsbacher, I think. She's at U of Wisconsin, Madison. She's had enough of the war on autism, too. She knows other researchers who are willing to change the discourse.

12:34 AM  
Blogger Stephanie said...

This is a very important message to get across, from a perspective I've never considered not having been in a position to ask for money like that. (Reminds me of the movie Contact.)

People need to understand that just because it is/can be difficult for parents to understand/appreciate their child, that this doesn't mean the child has no worth just as he/she is. If more parents knew what they could be fighting for, I believe that the ranks of those who wish to fight for individuals on the autistic spectrum would swell compared to those who wish to fight against such individuals existing.

I know for my husband and myself it's been a fight since we received our first son's diagnosis that we had the right to accept him just as he is, and that helping him was more important than changing him. Most people thought our priorities were backwards and pressured us to change them. Now I know we are not alone, and I'm grateful for that.

1:31 AM  
Blogger SquareGirl said...

Estee,
Thank you,
Alana

1:31 AM  
Blogger so much for mercury said...

I'm so happy to see you quoted Paul Collins, and that the parents approved overall. Reading Paul Collins book was such an overwhelming experience for me, that I kind of don't trust myself in recommending it as enthusiastically as I have been. So it's nice to hear it went over so well at the conference. A teacher at my son's early intervention program loaned me Catherine Maurice's "let me hear your voice", with the best of intentions I am sure, and I responded with two copies of "Not Even Wrong", and the advice that she loan it out first. I have since given other copies to several friends and relatives. What a wonderful book.

1:33 AM  
Blogger Stephanie said...

Camille,

I live in Wisconsin and have never heard of Dr. Gernsbacher. I'll have to look her up.

1:35 AM  
Blogger Susan Senator said...

Estee-
Magnifique! I gave a keynote yesterday and talked about this very notion, that there is nothing wrong with our children, only an ignorant world out there waiting to learn about and from them. I am so tired of hearing about our "broken" children. Thank you, thank you!

6:27 AM  
Anonymous Philip Stern said...

Though I'm not a parent of an autistic child, I was very moved by your perspective. IMO, the underlying ethos you espouse is at the core of humane civilization -- irrespective of personal political leanings.

10:08 AM  
Blogger Estee Klar-Wolfond said...

Camille,

Thanks for the heads up on Gernsbacher. I am reviewing now also from Michelle Dawson who has referenced her.

Douglas Biklen has agreed to speak at the upcoming October event, btw. A lecture series will be held this October in Toronto in support of autism acceptance, so everyone mark your calendars: October 5-November 5.

10:19 AM  
Anonymous Bonnie Ventura said...

Gernsbacher was one of the presenters at the AAAS symposium where Mottron and Dawson's work was also featured.

She has written about the need for acceptance, not cure.

I hope you will invite her to participate in your event. She is an eloquent and impassioned advocate.

12:47 PM  
Blogger Jockey said...

Are 80% of fetuses with Down Syndrome detected? I don't think so.
Please cite your study.
I did enjoy Paul Collins's Not Even Wrong, as well as his wife Jennifer Elder's Different Like Me: My Book of Autism Heroes.
I like them most because they are not anti-autism; however, in their enthusiasm to paint autism in a positive light, how accurate are they? Who is autistic when we paint autism as strengths? Sometimes it seems to me that the two camps are describing two totally different populations. Can you fit Craig Shulze's son into the description of autism given by Paul Collins? You cannot.
When I read Fragile Successes by Virginia Walker, it hit me that what we see as autism varies very widely. Of the nine autistic people described by Walker, most are multiply disabled, and one has fragile x.
Where do they fit into Collins' scheme?

1:16 PM  
Blogger Estee Klar-Wolfond said...

It is cited in many locations and you can view one online German study at http://www.answers.com/topic/down-syndrome

which states:

"Advocates for people with Down syndrome stress that affected individuals have the same human rights and emotions as any other human beings. Down syndrome is considered grounds for abortion in an increasing number of countries. The number of children born with Down syndrome is decreasing due to the large number of abortions following an early diagnosis of Down syndrome during pregnancy. In a hearing before the German Parliament, doctors stated that 90% of all fetuses prenatally diagnosed with Down syndrome are aborted. This number is consistent with the official statistics, wherein 1500 children with Down syndrome should, statistically, have been born per year (at a prevalence rate of 1:600), but only 63 per annum were listed in the 1995 birth register. In the United States numbers are reported to fluctuate between 70-80% of all women diagnosed during pregnancy will opt to terminate the pregnancy because of Down syndrome. Advocates for Down syndrome state this is similar to eugenics and is often based in fear of the unknown. Further, they argue that many parents given the information of a Down diagnosis are not fully informed on the wide range of the disorder or that there is an adoption waiting list full of people who wish to have a child with Down syndrome."

I've come across this statistic so many times, actually.

I completely disagree with your comment. I've explained myself in all of my posts if want to read them,

1:59 PM  
Blogger Estee Klar-Wolfond said...

Jacko,

Are you really 16? Good for you for getting into this!

2:04 PM  
Blogger Estee Klar-Wolfond said...

Also, for anyone else interested you can google the stats or look
here:

http://www.washingtonpost.com/wp-dyn/articles/A51671-2005Apr13.htmlere:

2:06 PM  
Blogger abfh said...

Estee, this post makes disturbing but very accurate points. Corporations indeed have little interest in the details of where their charitable gifts go; they're just looking to see how much good P.R. they can get. Because autism has been in the news recently, autism-related donations seem to have a good return on investment, in terms of positive public attention.

We need to make enough noise so that the attention becomes much less positive. If the major media picked up on the eugenics controversy and started publishing stories about it regularly, you can be sure the corporations would drop NAAR like a hot potato.

Keep on blogging, everyone!

2:09 PM  
Blogger Jannalou said...

Estee, it might be interesting also to look up the accuracy of amniocentesis.

It isn't as accurate as people think it is. So some parents abort babies who don't have Down Syndrome, and vice versa.

*sigh*

Reasons why, besided the fact that I hate needles and am allergic to ultrasound gel, I won't be having too many tests done beyond those that are absolutely necessary. Assuming I am ever pregnant.

2:36 PM  
Blogger Estee Klar-Wolfond said...

Jannalou,

Yes, I agree, although having had the experience of pregnancy and those prenatal tests, and having chosen to not do amniocentisis in the past, if I were pregnant now, I still don't know if I would have one.

The value of experience?

3:52 PM  
Anonymous Anonymous said...

Great article that explains why many people are trying to oust us from society. I want to take note especially at the end of the article. Suzanne Wright (or Suzanne Wrong) states that autism is speaking, in the sense that autistics are finally speaking out about their life to the world instead of being helpless. Then she goes on to say that we should not accept autism, but instead fight it. That says it all. Because autistic ways are different than everyone else, they feel that we should be considered inferior citizens and less human than them and not give us equal rights as humans. What they are doing is no better than the slavery supporters before the American Civil War. They are promoting oppression of a set of humans just because they are different and that is wrong. Their real goal is to eliminate autism, or in other words, eliminate all autistics because they are supposedly "less human". They don't really want to hear autistics speak, they are more like eugenics speak, they speak of why autistics shouldn't exist, because they supposedly "suffer from autism", according to them (a lie). We must fight their oppressive views if we are ever to have full equal rights in society, because as long as they are the dominant voice about autism and autistics, we will lose out in the end. And we have to keep our guards up especially in April, which is “Dehumanize Autistics Month” in the United States.

6:48 PM  
Blogger Alyric said...

Great article:

Favourite line:

"I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one"

7:52 PM  
Blogger Jockey said...

This comment has been removed by a blog administrator.

8:27 PM  
Blogger Jockey said...

I'd seen the stat that 70% of those prenatally diagnosed with Down's were aborted.
But I figured that most weren't prenatally diagnosed. I mean, there are six Jewish kids my age with Down's in my neighborhood.
I am seventeen.
To me it seems that arguing for the lives of people with autism (or any other difference) on the basis of possible economic benefits is a stroll in the direction of eugenics.
Jocko has two "o"s.

8:30 PM  
Blogger Kev said...

Very good post Estee. Uncomfortable reading in a way but very very good.

"I am so tired of hearing about our "broken" children."

Me too Susan. Its a constant refrain from some quarters.

1:04 AM  
Blogger Jannalou said...

"I am so tired of hearing about our "broken" children."

Me too Susan. Its a constant refrain from some quarters.

I'm tired of feeling broken whenever I do something I really should have been able to avoid doing by now. (See my most recent post at my Commentary blog for an example.)

If people were more honest about their own failures, perhaps people like me wouldn't end up feeling broken when we're really just human.

2:01 AM  
Blogger Lisa/Jedi said...

Another amazing post, estee! This seems to me to be another reason not to be shy about our feelings for & about our kids with autism. We who value our kids may not "be" the corporate givers (or maybe we are...) but we can spread our perspectives both publicly, as you have, & privately with friends & family. I firmly believe that it is personal experiences that form the strongest impressions of other people. Our "village", from members of our church to the members of our sailing club, all know that our son is autistic, they know him as a person, & they see how we behave with him. We are the best role-models for those who are ignorant, because the ripples spread...

Keep up the great writing & work! :)

10:04 AM  

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